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The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Linnea's Story.
“I was just telling someone in an email yesterday that [Mass General] is kind of like my home away from home. My medical team has become like my family. I’ve been coming here for 12 years in April.”
“In my particular case, I wouldn’t be alive if I didn’t come here. I have stage 4 lung cancer and my care here has been just absolutely cutting edge. For instance, in 2008, I had run out of treatment options and basically had a talk with my oncologist and I asked ‘how much time do I have left?’ and he said 3 to 5 months. Then, I had a biopsy that was submitted for genetic testing and I was found to have the ALK mutation and they had a clinical trial here that targeted it. I became the fourth person in the world with non-small cell lung cancer to try this particular experimental therapy. It worked. Now I’m on my third phase clinical trial.”
“My life has changed in pretty much every way. Prior to my diagnosis, I think there were so many things I was afraid of, including cancer. When I was diagnosed, I was only 45. I’ve never smoked and I couldn’t believe that this had happened. I used to tell people that a diagnosis is like that feeling of being in an airplane when it’s going down. I just thought ‘this was it.’ I have been to so many places since then that I never thought I would go. When you have advanced cancer the treatments that I’m getting don’t represent a cure. They just stop the cancer for a while and it’s kind of always like this. That can be incredibly nerve-wracking but I realized early on that I had some personal qualities that kind of made me ideal for this journey. I’m not risk adverse. I sit well with uncertainty. I’m very resilient. All of that has just been strengthened and in the meantime, I’m no longer afraid of much of anything. Back when I used to say ‘I can’t’ now I say ‘I can’.”
“I think with cancer, far too often there is emphasis on cure. We all just want to get it out of our body. I think it’s important to understand that you actually can live with this disease and for me; my hopes were dashed pretty early. When I was diagnosed, I was stage 1 so I had surgery with most of my left lung removed followed by chemotherapy. My first scan after chemo I already had something back in my lungs. I immediately had to switch up from thinking I was going to be cured to I’m just going to survive for as long as I can. My original oncologist was super helpful when he explained to me that with every bell curve, there are a lot of people here in the middle and there are some people on this end who don’t do very well, but there are some people way out on this end who do exceptionally well. He called them ‘outliers’ and I would ask him to tell me stories of outliers like they were fairytales. I just focused on that bell curve and decided that I was going to be an outlier. And what do you know, I am."
“I’ve had two extraordinary oncologists here. I guess the other thing I would say is we all know what is probable but think about what is possible. There are always exceptions. I just decided right in the beginning to think of myself as exceptional. It was exceptional that I had gotten this disease in the first place, so why couldn’t I be exceptional and survive?"
“I’ve been so fortunate because when I was diagnosed my youngest was 7 and almost 8 years to the day I was told that I only had 3 to 5 months to live. I got to see him graduate from high school and he just started college in the fall here in Boston. Pretty cool.”
“Every day honestly. Certainly, when I responded to that first clinical trial it was like a fairytale quality because I had accepted that I was going to die. I was seeing a psychiatrist to help me prepare. There was no option. So to be given a second change, was an extraordinary day. But I do start every single day by saying ‘I’m alive. I’m alive. I’m alive.’ I emailed a friend today and told her that today I threw in a couple extra because I was really feeling it. I know what a gift each day is and I really do my best to enjoy every moment. Even when I’m stuck in traffic, the commute just sucked, but I was hearing good songs on the radio. It’s okay.”
“Approach life with gratitude. As difficult as it is to face something like a terminal cancer, it’s such an extraordinary honor to have so many people working so hard to try to keep me alive. I think the best part of my journey has been all the people that it has brought me in contact with. I have met some of the most extraordinary people, like my oncologist now, Dr. Alice Shaw, she’s my personal goddess. I just feel very lucky.”
This interview took place October 25th, 2016.
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